Five Years

by Kayte

Five years ago Max and Lola came into our lives unexpectedly and tumultuously. We set out on a parenting journey that we weren’t prepared for, but it has taught us so much about love and strength and who we are and what we are capable of. In the years since their birth we have celebrated countless victories, overcome unimaginable adversity, experienced unconditional love, and felt our hearts break into a million pieces.

In the early days I naively thought that “this NICU thing” would be over when we finally brought Max and Lola home from the hospital, but I have since realized that this is something that, for better and for worse, will shape us for the rest of our lives. I’ve often wondered if I would go back and change things if I could, and I think as parents we would do anything to protect our kids, but I wouldn’t trade them for anything.

We remind ourselves that we are incredibly lucky to have our family together; thriving, happy, mostly healthy. Every day together is a miracle, even in, especially in, those most mundane of moments when things just feel ordinary. Happy 5th birthday Max and Lola. We are in awe of you. We are SO proud of you. We Love You.


Sock Sorting

by Kayte

Last fall the kids did a two-month clothing-themed study in school. They washed clothes, practiced closures (buttons, zippers, snaps), and sorted laundry. Since then Lola’s sock-sorting skills have really come in handy. She loves helping me with the laundry, and she can organize a whole pile of mismatched socks all by herself. Just recently she’s started working on folding them together too. Love my little helpers!


Mountain Climber

by Kayte

One of Lola’s new favorite activities at PT is “mountain climbing.” She lies in this big, fabric swing and pulls herself to the top of a rope where she grabs a ring, then she has to let herself back down slowly and put the ring on a cone. The first time Lola attempted this she was extremely wary, but now she lets go of the rope from way high up so she swings all the way back and just laughs and laughs the whole time. It’s so good to see her comfortable in her body.

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Bittersweet Anniversary

by Kayte

Today marks the one-year anniversary of Lola’s discharge from her month-long hMPV-/MRSA-pneumonias + fungal-infection-scare hospital stay. It’s been a rough medical year since then; we’ve dealt with chronic ear infections, multiple surgeries, and another pneumonia hospitalization. Worse than that is the fear that grips us every time Lola spikes a fever, and a loss of confidence in our normalcy that I didn’t experience post-NICU. I’m conflicted between feeling invincible because we have conquered so much, and feeling that we have cheated death and are flying too close to the sun. Looking back at where we started I am in awe of the miracle of life and medicine, but I am also all too aware of their fragility and limitations. Ignorance is bliss as they say, and we have learned much these last five years. I am hoping time will heal these emotional wounds, as time continues to heal our little miracles and grow them into strong[er], [more] resilient little kids.

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On a more normal note, we spent the morning at the pediatrician’s office with two mildly sick kids. Poor Maxie has had a cough since last Monday and a runny nose that got markedly worse over the weekend. Max’s O2 sats were on the low-end of normal and the doctor said his lungs sounded wheezy, so we’re starting breathing treatments and have a prescription for antibiotics if Max doesn’t get better in the next day or two. Lola spiked a little fever this morning and had one goopy eye, but luckily her lungs sounded clear as a bell (yay steroids!). The pediatrician suspects that Max might be on the recovery side of this bug while Lola might just be starting it, but we have an antibiotic prescription for her too if she needs it.

We weighed the kids at the doctor’s office today. Max is approaching the 40-pound mark which means yet another carseat transformation; he’s too heavy for the LATCH anchors that make carseat installation super easy, so now we’re struggling to install the carseat using the shoulder-lap belt. After he grows out of this carseat configuration (65lbs/49in), he will move to a booster seat and use the car’s regular seatbelt (vs. the carseat’s 5-point harness). At 40 pounds he also exceeds the weigh limit for our regular stroller, but we haven’t really been using it much lately. Both kids prefer to walk and Max can unbuckle himself to climb out and/or unlock the brake and push himself around wheelchair-style. Slowly but slowly we are moving away from mounds of baby equipment.

Lola weighed in at 32-1/2 pounds – not only has she broken the 30-pound mark for the first time (yay!) but it’s crazy to think that she weighed 10 pounds less a year ago when she lost so much weight in the hospital. She’s 50% bigger than she was a year ago – wow!

Weight
Max 39-1/2 pounds
Lola 32/1/2 pounds


Character Award

by Kayte

Lola received her second student of the month award for the school year: the trustworthiness award for somebody who is honest and trustworthy – Lola!

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Cleared Up

by Kayte

As of Wednesday Lola still had a little bit of lingering cough, so we scheduled another doctor’s appointment just to be on the safe side. Her cough started January 20th so today would have been three weeks of coughing. Magically she woke up this morning completely cough-free and we were able to cancel the appointment! The nurse laughed that she’s never sure if it’s a good thing when I call, but today at least it was a good call. I joked that hopefully we won’t see her again until the kids’ wellness visit in April. Ahh morbid medical humor. Knock on wood.

This adenovirus experience adds a little bit of believability to my calming mantra: not every cold turns into pneumonia, not every cold turns into pneumonia…


Adenovirus Followup

by Kayte

After a few days of antibiotics and round-the-clock breathing treatments Lola started feeling much better. Her fever is gone, the cough is more dry, and she has been back in school. Out of an abundance of caution the pediatrician wanted to see Lola again today, and will continue to follow up with her until this cough is completely gone, but he said everything looks much better. We can cut back to every-six-hour breathing treatments during the day and will finish out her 10-day course of antibiotics.

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Adenovirus

by Kayte

Over the weekend Lola’s cough got more junky, and yesterday she developed an ongoing fever. She stayed home from school this morning and we went back to the pediatrician this afternoon. They performed a rash of tests for RSV, flu, strep, and UTI (after an uncharacteristic bedwetting incident last night). The nasal swabs gave her a bloody nose (all over my white t-shirt), but a popsicle helped cheer her right back up. All the tests came came back negative so our pediatrician suspects it may be adenovirus which is going around right now. This virus causes fever, congestion and cough, but tends to stay in the upper respiratory tract (nose/throat) and not invade the lungs. Crossing our fingers that this is all it is and we can get through a regular non-hospitalized illness. The doctor sent her home with antibiotics (just in case, since the cough has been 10+ days) and every-four-hour breathing treatments (including overnight, Zzz…) until the cough gets better. She can go back to school when she’s fever-free with improving symptoms. We spend a lot of time in doctors’ offices.

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I’m trying not to freak out as we approach the one-year anniversary of Lola’s first pneumonia, but she’s following an eerie pattern of late-January sickness that is turning my stomach into knots. On the plus side she has had no fever; I just have to keep reminding myself that not every cold turns into pneumonia, not every cold turns into pneumonia…


Back to PT

by Kayte

The New Year means a new benefits cycle for insurance, so we were able to re-start Lola’s PT at the clinic. It was a happy reunion with our two favorite therapists. They were impressed with Lola’s progress over the last few months, and they really increased her workload. She worked on balance, did strength exercises, climbed stairs, navigated the obstacle course and stretched her legs. We’re looking forward to having this session back in our weekly rotation.

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5-Day Cough

by Kayte

Last Friday Max and Lola both came down with a cough. It hasn’t been too bad, just a little gunky, no fevers, no labored breathing, but after five days it hasn’t gotten much better either so we decided it was time to take Lola to the doctor. Luckily the pediatrician said her lungs sound clear, and told us to just keep on with breathing treatments. He said if it’s not better 7-10 days from onset (since last Friday, so next Monday) to bring her back to check things out. In the meantime she’s fine to go to school.

We also talked about the pulmonology visit, and our pediatrician fundamentally disagrees with trying to fatten Lola up. While he does agree that more weight will protect her from illness giving her more reserves, he said that is only true of healthy muscle weight, not just any fat weight. He did agree that the sleep study was a good idea, because sometimes shallow breathing overnight (in Lola’s case 12 hours worth) can allow gunk to build up in the lungs and trigger pneumonia.

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Sepia

by Kayte

Lola’s teachers surprised us with a belated Christmas gift from Lola. Every year they take portraits of the students in fancy clothes and give the parents a framed copy.

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It reminded me of this old Western-style photo we have of Nana Bah, Brody and Uncle David:

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Pulmonology Followup

by Kayte

Lola had an appointment today with a pulmonologist specialist who wants to follow her case with intermittent checkups. On the one hand he said there is no major obvious cause of Lola’s recurring pneumonias, but on the other hand there’s also no magic fix. He thinks it might be an unlucky combo of preemie lungs, small stature and neurology (cough reflex) that make her particularly susceptible to respiratory infections. He wants to get a follow-up chest x-ray in March to see what Lola’s healthy lungs look like so we have a baseline. He also ordered a sleep study (which we weren’t able to get scheduled until October) to see if there is anything overnight that might be affecting her breathing or growth. In the meantime we’re still doing breathing treatments (Xopenex – bronchodilator and Pulmicort – steroid) 2X a day as maintenance. When I asked if there are any long-term side effects with these medications, our pediatrician mentioned that weight gain can be a side effect of the steroid treatment. Hah! Bring it. We have another follow-up scheduled with the pulmonologist in May. Making all of these future appointments made me feel a little bit better that we have something to look forward to other than another pneumonia hospitalization. Part of me just wants to keep Lola safe in a bubble until the winter flu season is over, but several doctors have assured me that it’s better for her to live her normal life. Sigh.


Pedaler

by Kayte

This past weekend while we were in La Quinta Lola pedaled her bike for the first time ever! Something finally just clicked and there’s no stopping her now. Here she was on our walk today:

And later today at the park today she actually role played with some other kids – baking sand cakes in the bakery – which she doesn’t usually do. She and Maxie have started pretend-playing together a lot more at home lately, but at the park and on play dates she sticks with the grown ups and avoids other kids. It was magical to watch her interacting with these other kids tens of feet away from me!

AND just last week I watched Lola walk down two consecutive steps without a hand or railing. She’s been bravely stepping off the last step without assistance for a few months, but that’s the first time I’ve see her walk consecutive steps before. Looks like 2017 is shaping up to be a good year.


Swallow Study

by Kayte

As a follow-up to Lola’s most recent pneumonia, we took her in for a Modified Barium Swallow Study. They were looking to see if she is aspirating food/liquid into her lungs when she eats/drinks, which could then possibly house bacteria and cause pneumonia. As I was reading about swallow studies and aspiration syndrome I was surprised how many boxes we could check off: aspiration can be caused by prematurity and/or brain damage, and it can result in coughing choking, delayed growth and recurrent pneumonias. Check. Check. Check. Check. Check. I thought we might be on to something.

For the test, which is also called a Video Fluoroscopic Swallowing Exam (VFSE), Lola stood in front of an imaging machine while the doctor took an x-ray video of her as she drank barium. (This was somewhat exciting for Lola because she has read about barium in one of her favorite Curious George stories.) The barium was thick and chalky, but the doctor said that Lola handled it better than most of her adult patients. He also said that her swallow motility looked totally normal, and that there was no aspiration at the time of the test. It’s a bit inconclusive because it doesn’t mean that Lola has never aspirated before, just that she didn’t during these three swallows, but the fact that her motility looked normal is reassuring. We have an appointment with a pulmonologist in a couple weeks, so we’ll see if he has any more insight into her recurrent pneumonias.

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P.S. I’m trying to get a video of the swallow study but the imaging disks are all formatted for PCs. I’ll keep working on it. 1/29/17

P.P.S. I was finally able to read the imaging disks, but unfortunately the swallow study was only a series of still images, no video. 2/6/17


RSV – Followup

by Kayte

We had our appointment at the pediatrician’s office today for Lola’s RSV hospital discharge. She said Lola’s lungs sounded clear and that all her vitals looked good. We also had her check Max since we were there: his lungs still sounded a little gunky (since he’s a few days behind Lola on this illness) but his vitals also looked good and he seems to be recovering just fine at home. 

The doctor said we could start weaning back on the breathing treatments, eventually stopping next Monday which will be two weeks from the start of it all. We’ve been keeping up a grueling medical schedule at home – I had to make a chart just to keep track of everything (reminds me of the old days). It hasn’t left us much time for entertaining family. The breathing treatments alone take ~30 minutes each session between the two kids, and we’re doing them every 4 hours; plus we have to be hooked up to the nebulizer machine to do them. It doesn’t leave us much of a window to get out and about, but we’re enjoying our time together nevertheless. Hopefully we can get out a bit more over the next few days as we stretch out the breathing treatments to every 5-6 hours.


RSV – Home!

by Kayte

Lola had a great night and was discharged late this morning. We stopped by home to pick up Max and daddy, then rushed off to an important eye appointment which couldn’t be rescheduled (I’ll have to post more about all that later). We got home late after a long appointment and rush hour traffic, and then rushed around administering antibiotics and breathing treatments to two tired and cranky kids. It feels like we’re running a doctor’s office in our house; our kitchen counter looks like a pharmacy! But we’re home and (relatively) healthy so we’re happy, but tired. Goodnight!


RSV – Lively

by Kayte

Lola had another good day of progress. They switched her to oral antibiotics, decreased breathing treatments to every four hours (which we can do at home), and discontinued the IV hydration drip. She’s eating, drinking, going potty and acting like herself. As long as she maintains her vitals over the next 12 hours, the plan is to go home tomorrow.

Lola was in rare form this evening; cracking jokes, standing up in bed, throwing things on the floor. I told her if she didn’t cut it out she might get kicked out of here before she gets officially discharged.




RSV – The Corner

by Kayte

It appears that in these last 36 hours (knock on wood) Lola has turned The Corner. They were able to wean her from 2 liters of oxygen flow to room air (no nasal cannula!), stop her IV fluids, and decrease breathing treatments to every 3 hours. She’s still working hard, but able to maintain normal vitals. The doctors are talking about sending her home on Monday. For that to happen we need to switch to oral antibiotics and make sure she tolerates those (both stomach-wise and infection-wise), and decrease breathing treatments to every 4 hours, which we can then continue at home. The most important thing is getting the antibiotics right so she doesn’t have a flare-up/re-infection once we’re home.

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We had a nice day hanging out at the hospital; reading books, watching Christmas movies, eating picnic meals on her bed. It’s fun being at a dedicated children’s hospital – they do so much nice stuff for the kids. A few days ago a rolling mall came around and Lola was able to pick out Christmas presents for her parents (which they wrapped). Yesterday a library cart came by and let her pick out a book to read and take home. Today Santa Claus visited the hospital and all the kids got to pick out a toy. It seems every day someone is bringing by fun stuff; crayons, coloring books, stickers, bubbles, playdough, blocks. Unfortunately since Lola is in isolation she’s not able to leave her room (I went down to pick out her Santa present) or pet the therapy dogs :*( but everyone still does a great job of including her from a distance.

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Max had a good day too. He still has a cough, but wasn’t acting too sick. Antibiotics 2X a day and breathing treatments every 4 hours. He had fun running errands with Brody this morning – they got to meet some firefighters who were out practicing with the hook and ladder truck. After we did our afternoon hospital switch, Max and I played legos for awhile, then watched Rudolph with hot chocolate and hot tea. Nothing productive, just hanging out. Now it’s time for some much-needed rest so we can tackle the next day to come.


RSV – Assisted Cough

by Kayte

Lola had a rough night and not-so-good morning. She was requiring more oxygen support and desatting more frequently. Brody stayed at the hospital last night and gave me the report this morning, and I was anxious as I drove to the hospital for the switch. Wonderfully, by the time I got there, Lola had seemed to turn a corner. Her oxygen sats were up, breathing and heart rates down. She ate a decent amount for lunch at dinner, walked to the bathroom to pee and was downright feisty by bedtime (“Go poop on your head!” -Lola).

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They increased albuterol breathing treatments to every two hours which seem to be helping. They also started a therapy called assisted cough – a machine attached to a face mask that shoves a big breath of air into Lola’s lungs and then sucks it back out again. It’s supposed to get the mucus moving around and encourage Lola to cough on her own. She’s still on two different antibiotics and saline drip for hydration. At one point Lola was on 3 liters of oxygen flow, but they were able to wean that down to 1 liter by bedtime. Hoping for a good night and more improvements tomorrow.

Three Little Ella-phants

Unfortunately while I was chillaxing with Lola, Brody was having a rough afternoon with Max. First Max threw up all over both of them at the commissary at Brody’s work. Then Brody noticed that Max’s cough (which started this morning) was getting worse so they ended up at the pediatrician’s office. Max’s nasal swab came back RSV-negative (which the ped found hard to believe) but his lung x-ray was hazy with pneumonia and his O2 sats a little low, so he was sent home with antibiotics and breathing treatments of his own. What should have been Brody’s break from a sick kid ended up being more work than sitting here at the hospital. All I want for Christmas is a healthy family at home!


RSV – Day Five

by Kayte

Lola had a pretty quiet first night in the hospital and was definitely more comfortable than Tuesday night at home. We both managed to get some sleep. She is about the same today as she was yesterday – stable, but breathing heavily and requiring some oxygen support via nasal cannula. Lola’s cough has become more productive, which isn’t good or bad, just the way an illness progresses. She has been able to cough up some mucus, but is absolutely miserable doing it. She has had a fever off and on, treated with Tylenol, which is also typical for this stage in an illness. She’s getting breathing treatments up to every four hours, as needed, and is still getting antibiotics and steroids. Lola hasn’t been eating or drinking much, so they have her on an IV saline drip to keep her hydrated.

One hopeful thing that the doctor mentioned is that if we can assume today is day five of Lola’s illness (symptoms started on Saturday), then viral illnesses usually peak at the 3-5 day mark, which is why we haven’t seen much improvement from yesterday. The doctors are hopeful that if this is the peak, and having had time for the antibiotics/steroids to kick in, we should start seeing improvement soon. If not, they may need to dig deeper to figure out what is going on. Day by day for now.

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